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MDS Myelodysplastic syndromes

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  #1  
Old Wed May 4, 2011, 07:46 PM
bebop bebop is offline
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Location: Maysville Ga
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he fought a good fight

I lost Dad yesterday. He passed in my arms standing up. He fought so hard and so long. One minute he was talking and kind of giggling a little and the next he was gone.
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  #2  
Old Wed May 4, 2011, 08:44 PM
mausmish mausmish is offline
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Elaine,

I'm so sorry about your losing your Dad. You've been a wonderfully supportive daughter, and it's great that you were able to be with him to the end. It sounds like his final moments were happy, and he is surely at peace now.

Karen
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #3  
Old Wed May 4, 2011, 10:03 PM
cathybee1 cathybee1 is offline
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I'm so sorry to hear about this, and so glad you were with him at the end of his fight as you were at the beginning. Your dad's story has been very inspiring.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #4  
Old Thu May 5, 2011, 12:59 AM
Neil Cuadra Neil Cuadra is offline
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I am very sorry that you lost your Dad, Elaine. Even though you knew his time was limited it must be hard to accept that he's really gone.

He couldn't have asked for a more dedicated daughter. You fought this battle with him every step of the way and I hope you find peace in your memories of your time with him.
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  #5  
Old Thu May 5, 2011, 01:37 AM
Chirley Chirley is offline
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Hello Elaine.

I would like to offer my condolonces on the passing of your father.

I know this is probably too soon for you to appreciate but .....what a wonderful way to say goodbye to someone you love. He passed in your loving arms and happy. What a wonderful memory for you to have.


Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #6  
Old Thu May 5, 2011, 03:24 AM
Neel Neel is offline
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May the departing soul rest in peace

I am so sorry to know your loss bepop, may the departing soul rest in peace and i pray to God to give you and your family strength to deal with the situation.

regards,

neel
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Father age 64 diagnosed with MDS RAEB-2, with 15%-18% blasts in October 2010. Only had blood and platelet transfusions. Ayurvedic treatment which showed result for arnd 5 months. Started Tahlidomide 100 mg started on 22 nd April 2011. Revolade 50 mg started on 2 nd april 2012.
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  #7  
Old Thu May 5, 2011, 09:17 AM
bebop bebop is offline
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thank you all so much. I am very blessed to have you all. I will come back and maybe give a litte more detail. I think it was pretty amazing. I am doing ok for now. Tomorrow and Saturday come the hardest part. Much love and peace to you all.
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  #8  
Old Thu May 5, 2011, 12:11 PM
squirrellypoo squirrellypoo is offline
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I'm so sorry to hear of his passing, bebop. He really did fight as hard as possible throughout all this, and he was so lucky to have you there for support.
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #9  
Old Thu May 5, 2011, 04:28 PM
mscrzy1 mscrzy1 is offline
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So sorry to hear of your loss.
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Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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  #10  
Old Thu May 5, 2011, 06:47 PM
Al's Wife Al's Wife is offline
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I'm so sorry to learn of your Dad's passing, but I'm glad you were with him. May you have strength in the days ahead.
Linda
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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  #11  
Old Sat May 7, 2011, 09:13 PM
SheWhoKnits SheWhoKnits is offline
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Condolence

I'm sorry to hear of his passing. I know it's very painful. I lost my mom to lymphoma a few years ago. Take comfort in that he had as many years as he did and had a good life with a wonderful daughter. It's so nice he was happy.
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female dx MDS RCMD August 2010. Now 48 years old. trans bi-weekly, procrit weekly, dacogen 4 cycles failed
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  #12  
Old Wed Jun 1, 2011, 11:22 PM
bebop bebop is offline
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tomorrow is the 1 month mark. Man time sure has flown by. I wanted to tell how it happened with Dad. I hope that is ok with you guys but just felt like it is time to share.

As you guys know I think, they stopped dads' transfusions on April 5th. the Dr said he had maybe a month even if she continued those. He was so weak that day at the dr. He hugged his favorite nurse like he knew he would not see her again. Anyway he got to where he would not eat more than a bite or 2 at a time then towards the end he would only drink a tiny bit. He would get very confused especially the last few days.
The day he died was amazing really. I walked in the door and he said " hey old woman" I said "hey old man" and he laughed. I had been there about a half hour when some long time friends showed up. He told the older woman to give him a hug and he kissed her on the cheek. We all talked for a few minutes and he told his wife to take him to the bathroom. She put him on a walker with a seat and took him. I told the women that I didn't think he would be here by the end of the week. A few minutes had passed and my stepmom came out and got his little oxygen tank. Then she yelled for me with urgency in her voice. When I got to the bathroom she told me to hold his head up. Something had happened in a short time that he could not hold it up. I lifted his head and it was clammy. I told him to look at me. His eyes kind of rolled a little bit. I told him I had to get him off the toilet and if he could to help me which he did I think. I told him to put his arms around me while I got him up. His head rested on my shoulder and we took 2 steps backwards and I went to turn him around and his hand dropped off my shoulder. He was gone. I didn't know it at that moment. It was very fast.
I miss him terribly but God is so good. I had prayed every day and night for it to be fast and don't let him bleed out. I got both.

if this needs to be deleted I understand.
thank you all so much for your support over the last year. I pray they find a cure! soon!
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  #13  
Old Thu Jun 2, 2011, 08:28 AM
Neil Cuadra Neil Cuadra is offline
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Thank you for sharing the details of your Dad's last day, Elaine. The fear of dying affects so many in this community, as does the fear of not knowing how it will happen. It's hard to read about your experience but important for us to hear. Until we find a cure, death will remain a facet of MDS and we can't pretend otherwise.

It must have been painful for you to write about your Dad's last hours and moments but I hope it was also comforting for you to relate it. That your Dad could initiate hugs and jokes, eat a few bites, and enjoy some company convinces me that he was at peace and not in pain. I'm so glad that you were there at the time and that he knew it.
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  #14  
Old Thu Jun 2, 2011, 11:05 PM
mausmish mausmish is offline
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Hi Elaine,

Thank you so much for posting this poignant story of your Dad's final day. I hope that the writing was cathartic for you and will help you find peace. It's obvious the two of you were very close, all the way to the end.

Karen
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #15  
Old Mon Jun 6, 2011, 05:47 AM
bebop bebop is offline
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Neil I have to say with all the possible senarios for him to pass I was terrified of what would happen. I prayed every night for those not to happen. I prayed he would not have a bleed that we could see and for it to be fast and I got both. I do believe in the power of prayer. The bad part of it for me is he did not look like himself in the casket as he was really bad dehydrated. Yes it does help to talk and write about him. You guys here are wonderful support people. Not sure what I would have done without you all.
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  #16  
Old Mon Jun 6, 2011, 07:04 PM
freedom99 freedom99 is offline
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Prayer

Hello Bepop- Elaine
My thoughts and prayers will be with you this week.
Yes, the loss of your dad brings a journey of grief with all it's heartaches. It's also a journey that must be travelled to reach it's end and on the day it ends one can begin the reflect on the memories and make those memories and parts of your dad part of you to make you even stronger.
I will pray this week that you will safely with peace and calm walk this journey with confidence while placing your trust in Him alone.
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Wife 63, June 2010 MDS (refr anemia - excess blasts type-2) PLTs 11,000/μl with giant forms 2 TF/wk. Hgb kept at 80g/l with 1TF per 2 weeks. 9% blasts 2 cytogenic abnormalities del(5)(q22q35) + inv(20)(p11.23q11.21) 3 cycles Vidaza no effect. June 2011 to AML WBC to 67 blasts and Aur rods in blood.
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  #17  
Old Mon Jun 13, 2011, 12:03 PM
Noni Noni is offline
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I'm so sorry to hear of the the passing of your father. What a blessing for you to be there with him at the end.

Prayers for you and the family.
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